Abstract
Population-based studies have demonstrated that a significant and increasing proportion of deaths is preceded by a decision to withhold or withdraw life-sustaining treatment, defined as a treatment without which life would, with a very high probability, end within a foreseeable period. This chapter discusses ethical considerations around withholding and withdrawing life-sustaining treatments with a focus on neurologic disease. I discuss epidemiology, definitions and terminology, the ethical criteria for guiding decision-making and present a goals of care-based algorithm that may help make clinical decisions near the end of life. This algorithms suggests that treatment should not be administered unless it is both medically appropriate (indicated) and supported by the patient’s autonomous will. If patients or proxies demand a treatment considered medically inappropriate, the ethically correct response depends on the analysis of the underlying reasons of conflict. The chapter ends with some practical suggestions concerning advance care planning, palliative care consultation and clinical ethics consultation.
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van der Heide A, Deliens L, Faisst K, Nilstun T, Norup M, Paci E, et al. End-of-life decision-making in six European countries: descriptive study. Lancet. 2003;362(9381):345–50.
Seale C. End-of-life decisions in the UK involving medical practitioners. Palliat Med. 2009;23(3):198–204.
Pennec S, Monnier A, Pontone S, Aubry R. End-of-life medical decisions in France: a death certificate follow-up survey 5 years after the 2005 act of parliament on patients’ rights and end of life. BMC Palliat Care. 2012;11:25.
Schildmann J, Dahmen B, Vollmann J. End-of-life practices of physicians in Germany. Dtsch Med Wochenschr. 2015;140(1):e1–6.
Schmid M, Zellweger U, Bosshard G, Bopp M. Medical end-of-life decisions in Switzerland 2001 and 2013: who is involved and how does the decision-making capacity of the patient impact? Swiss Med Wkly. 2016;146:w14307.
Sprung CL, Cohen SL, Sjokvist P, Baras M, Bulow HH, Hovilehto S, et al. End-of-life practices in European intensive care units: the Ethicus Study. JAMA. 2003;290(6):790–7.
Vincent JL, Berre J, Creteur J. Withholding and withdrawing life prolonging treatment in the intensive care unit: a current European perspective. Chron Respir Dis. 2004;1(2):115–20.
Mark NM, Rayner SG, Lee NJ, Curtis JR. Global variability in withholding and withdrawal of life-sustaining treatment in the intensive care unit: a systematic review. Intensive Care Med. 2015;41(9):1572–85.
Quill CM, Ratcliffe SJ, Harhay MO, Halpern SD. Variation in decisions to forgo life-sustaining therapies in US ICUs. Chest. 2014;146(3):573–82.
Seale C. The role of doctors’ religious faith and ethnicity in taking ethically controversial decisions during end-of-life care. J Med Ethics. 2010;36(11):677–82.
Kinzbrunner BM. Jewish medical ethics and end-of-life care. J Palliat Med. 2004;7(4):558–73.
Zientek DM. Artificial nutrition and hydration in Catholic healthcare: balancing tradition, recent teaching, and law. HEC Forum. 2013;25(2):145–59.
Bulow HH, Sprung CL, Reinhart K, Prayag S, Du B, Armaganidis A, et al. The world’s major religions’ points of view on end-of-life decisions in the intensive care unit. Intensive Care Med. 2008;34(3):423–30.
Sprung CL, Maia P, Bulow HH, Ricou B, Armaganidis A, Baras M, et al. The importance of religious affiliation and culture on end-of-life decisions in European intensive care units. Intensive Care Med. 2007;33(10):1732–9.
Jox RJ, Krebs M, Fegg M, Reiter-Theil S, Frey L, Eisenmenger W, et al. Limiting life-sustaining treatment in German intensive care units: a multiprofessional survey. J Crit Care. 2010;25(3):413–9.
Wood GG, Martin E. Withholding and withdrawing life-sustaining therapy in a Canadian intensive care unit. Can J Anaesth. 1995;42(3):186–91.
Asch DA, Christakis NA. Why do physicians prefer to withdraw some forms of life support over others? Intrinsic attributes of life-sustaining treatments are associated with physicians’ preferences. Med Care. 1996;34(2):103–11.
Asch DA, Faber-Langendoen K, Shea JA, Christakis NA. The sequence of withdrawing life-sustaining treatment from patients. Am J Med. 1999;107(2):153–6.
World Health Organization. WHO definition of palliative care 2012. Available from: http://www.who.int/cancer/palliative/definition/en/.
Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733–42.
Haun MW, Estel S, Rucker G, Friederich HC, Villalobos M, Thomas M, et al. Early palliative care for adults with advanced cancer. Cochrane Database Syst Rev. 2017;(6):Cd011129.
Cochrane TI. Withdrawing and withholding life-sustaining treatment. Handb Clin Neurol. 2013;118:147–53.
World Health Organization. The top 10 causes of death, Fact sheet updated January 2017. Geneva: WHO; 2017. Available from: http://www.who.int/mediacentre/factsheets/fs310/en/.
Alonso A, Ebert AD, Dorr D, Buchheidt D, Hennerici MG, Szabo K. End-of-life decisions in acute stroke patients: an observational cohort study. BMC Palliat Care. 2016;15:38.
Holloway RG, Benesch CG, Burgin WS, Zentner JB. Prognosis and decision making in severe stroke. JAMA. 2005;294(6):725–33.
van der Steen JT, Radbruch L, Hertogh CM, de Boer ME, Hughes JC, Larkin P, et al. White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliat Med. 2014;28(3):197–209.
Veldink JH, Wokke JH, van der Wal G, Vianney de Jong JM, van den Berg LH. Euthanasia and physician-assisted suicide among patients with amyotrophic lateral sclerosis in the Netherlands. N Engl J Med. 2002;346(21):1638–44.
Tuck KK, Zive DM, Schmidt TA, Carter J, Nutt J, Fromme EK. Life-sustaining treatment orders, location of death and co-morbid conditions in decedents with Parkinson’s disease. Parkinsonism Relat Disord. 2015;21(10):1205–9.
Seeber AA, Hijdra A, Vermeulen M, Willems DL. Discussions about treatment restrictions in chronic neurologic diseases: a structured review. Neurology. 2012;78(8):590–7.
Jox RJ, Kuehlmeyer K, Klein AM, Herzog J, Schaupp M, Nowak DA, et al. Diagnosis and decision making for patients with disorders of consciousness: a survey among family members. Arch Phys Med Rehabil. 2015;96(2):323–30.
Creutzfeldt CJ, Holloway RG. Treatment decisions after severe stroke: uncertainty and biases. Stroke. 2012;43(12):3405–8.
Rachels J. Active and passive euthanasia. N Engl J Med. 1975;292(2):78–80.
Munshi L, Dhanani S, Shemie SD, Hornby L, Gore G, Shahin J. Predicting time to death after withdrawal of life-sustaining therapy. Intensive Care Med. 2015;41(6):1014–28.
Rubenfeld GD. Principles and practice of withdrawing life-sustaining treatments. Crit Care Clin. 2004;20(3):435–51. ix
Campbell CS, Cox JC. Hospice-assisted death? A study of Oregon hospices on death with dignity. Am J Hosp Palliat Care. 2012;29(3):227–35.
van Beinum A, Hornby L, Ward R, Ramsay T, Dhanani S. Variations in the operational process of withdrawal of life-sustaining therapy. Crit Care Med. 2015;43(10):e450–7.
Sprung CL, Paruk F, Kissoon N, Hartog CS, Lipman J, Du B, et al. The Durban World Congress Ethics Round Table Conference Report: I. Differences between withholding and withdrawing life-sustaining treatments. J Crit Care. 2014;29(6):890–5.
Barilan YM. Rethinking the withholding/withdrawing distinction: the cultural construction of “life-support” and the framing of end-of-life decisions. Multidiscip Respir Med. 2015;10(1):10.
Marckmann G, editor. Praxisbuch Ethik der Medizin. Berlin: Medizinisch Wissenschaftliche Verlagsgesellschaft. isbn:978-3-95466-117-6.
Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ. 2005;330(7498):1007–11.
Jox RJ. Sterben lassen. Über Entscheidungen am Ende des Lebens. Hamburg: Rowohlt; 2013.
Jox RJ, Schaider A, Marckmann G, Borasio GD. Medical futility at the end of life: the perspectives of intensive care and palliative care clinicians. J Med Ethics. 2012;38(9):540–5.
Burns JP, Truog RD. Futility: a concept in evolution. Chest. 2007;132(6):1987–93.
Pellegrino ED. Futility in medical decisions: the word and the concept. HEC Forum. 2005;17(4):308–18.
Schneiderman LJ. Defining medical futility and improving medical care. J Bioeth Inq. 2011;8(2):123–31.
Blair RJR, Colledge E, Murray L, Mitchell DG. A selective impairment in the processing of sad and fearful expressions in children with psychopathic tendencies. J Abnorm Child Psychol. 2001;29(6):491–8.
Bruno MA, Bernheim JL, Ledoux D, Pellas F, Demertzi A, Laureys S. A survey on self-assessed well-being in a cohort of chronic locked-in syndrome patients: happy majority, miserable minority. BMJ Open. 2011;1(1):e000039.
Lule D, Zickler C, Hacker S, Bruno MA, Demertzi A, Pellas F, et al. Life can be worth living in locked-in syndrome. Prog Brain Res. 2009;177:339–51.
Rousseau MC, Baumstarck K, Billette de Villemeur T, Auquier P. Evaluation of quality of life in individuals with severe chronic motor disability: a major challenge. Intractable Rare Dis Res. 2016;5(2):83–9.
Rousseau MC, Pietra S, Nadji M, Billette de Villemeur T. Evaluation of quality of life in complete locked-in syndrome patients. J Palliat Med. 2013;16(11):1455–8.
Appelbaum PS. Clinical practice. Assessment of patients’ competence to consent to treatment. N Engl J Med. 2007;357(18):1834–40.
Fagerlin A, Schneider CE. Enough. The failure of the living will. Hast Cent Rep. 2004;34(2):30–42.
Jox RJ. Preparing existential decisions in later life. Advance healthcare planning. In: Schweda M, Pfaller L, Brauer K, Adloff F, Schicktanz S, editors. Planning later life bioethics and public health in ageing societies. Burlington: Ashgate Publishing Limited; 2017. p. 164–80.
Shalowitz DI, Garrett-Mayer E, Wendler D. The accuracy of surrogate decision makers: a systematic review. Arch Intern Med. 2006;166(5):493–7.
Houben CH, Spruit MA, Groenen MT, Wouters EF, Janssen DJ. Efficacy of advance care planning: a systematic review and meta-analysis. J Am Med Dir Assoc. 2014;15(7):477–89.
Robinson L, Dickinson C, Rousseau N, Beyer F, Clark A, Hughes J, et al. A systematic review of the effectiveness of advance care planning interventions for people with cognitive impairment and dementia. Age Ageing. 2012;41(2):263–9.
Brinkman-Stoppelenburg A, Rietjens JA, van der Heide A. The effects of advance care planning on end-of-life care: a systematic review. Palliat Med. 2014;28(8):1000–25.
Austin CA, Mohottige D, Sudore RL, Smith AK, Hanson LC. Tools to promote shared decision making in serious illness: a systematic review. JAMA Intern Med. 2015;175(7):1213–21.
Martin RS, Hayes B, Gregorevic K, Lim WK. The effects of advance care planning interventions on nursing home residents: a systematic review. J Am Med Dir Assoc. 2016;17(4):284–93.
Oliver DJ, Borasio GD, Caraceni A, de Visser M, Grisold W, Lorenzl S, et al. A consensus review on the development of palliative care for patients with chronic and progressive neurological disease. Eur J Neurol. 2016;23(1):30–8.
Kwak J, Wallendal MS, Fritsch T, Leo G, Hyde T. Advance care planning and proxy decision making for patients with advanced Parkinson disease. South Med J. 2014;107(3):178–85.
Fritz L, Dirven L, Reijneveld JC, Koekkoek JA, Stiggelbout AM, Pasman HR, et al. Advance care planning in glioblastoma patients. Cancers. 2016;8(11).
Levi BH, Simmons Z, Hanna C, Brothers A, Lehman E, Farace E, et al. Advance care planning for patients with amyotrophic lateral sclerosis. Amyotroph Lateral Scler Frontotemporal Degener. 2017:1–9.
Tran LN, Back AL, Creutzfeldt CJ. Palliative care consultations in the Neuro-ICU: a Qualitative Study. Neurocrit Care. 2016;25(2):266–72.
Creutzfeldt CJ, Engelberg RA, Healey L, Cheever CS, Becker KJ, Holloway RG, et al. Palliative care needs in the Neuro-ICU. Crit Care Med. 2015;43(8):1677–84.
Fox E, Myers S, Pearlman RA. Ethics consultation in United States hospitals: a national survey. Am J Bioeth. 2007;7(2):13–25.
American Society for Bioethics and Humanities. Core competencies for Health Care Ethics Consultation Glenview, IL, USA. 2010. Available from: http://www.asbh.org/publications/content/core.html.
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Jox, R.J. (2019). Withholding and Withdrawing Life-Sustaining Treatment. In: Creutzfeldt, C., Kluger, B., Holloway, R. (eds) Neuropalliative Care. Springer, Cham. https://doi.org/10.1007/978-3-319-93215-6_15
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DOI: https://doi.org/10.1007/978-3-319-93215-6_15
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